The Brain Surgery

The pre-surgical appointments all got done and are out of the way. I know pretty much what to expect at this point.

The Visual Fields Test was sort of revealing to me. My peripheral vision is worse than I thought, and I’ve got a couple of other blind spots I didn’t really realize were there. They made perfect sense when I was doing the test, but hadn’t registered just walking around. I’m not sure what all I’ll get back after the surgery, or how long that will take. It sounds like some of it will be sooner than later.

My sister insisted on being here for the surgery. On one hand, I’m really glad she wouldn’t take no for an answer, but I also feel bad that she’s having to burn more vacation to be here again after just being here in June. My friend the RN will also come back to help out. I’m also eternally grateful for her help, too. I’ll have both of them go with me to appointments to help with questions and concerns. An extra set of ears can be really helpful. My parents want desperately to be here. I wish that could work. I’ll have them out later when things have settled some and I’m feeling better.

Another thing that happened this week is that one of my co-workers started a MealTrain for me. There are a couple of people putting themselves on the calendar to bring meals after surgery. This is pretty cool.

Friday, September 28, 2018

My sister flew in a little early from Minnesota to help me with home prep and hang out some before surgery. She’ll be here for surgery and part of the week after. I do enjoy hanging out with her and running around Seattle showing her some sights. She’s also really good at logistical stuff, so I know we’ll get a bunch of things figured out before Monday.

Over the weekend, we had brunch with a couple that I’d met in the Infusion Center at the hospital. The husband had a brain tumor and we’ve kept in touch. This weekend was the first time I’d seen them in maybe 4 months or so. I was impressed with how much progress he’s made since I saw him last. We talked about his surgery a bit – I wanted some idea of what to expect. His experience was a lot different than I thought but it was nice to see them and catch up anyway. I’m not sure his experience made my sister feel any better, though.

Monday, October 1st

I had my first brain lesion removed today. It took about 3 hours and it went well. No surprises, problems or complications. My sister expected that I’d be groggy or tired after having brain surgery. I wasn’t and I didn’t expect to be. They weren’t removing any part of my brain. They removed a tumor that is still breast cancer. It just has, for whatever reason, a friendly environment to grow in in my head next to my brain.

The only thing that wasn’t quite as planned is that it took longer than expected to get me up to my room, but that had nothing to do with me and how I was doing. It was all hospital logistics. Thank God. My sister and I were both able to order dinner when I got to my room. The cafeteria food’s not spectacular, but it’s better than some other places I’ve gotten food downtown, so it worked.

Overnight, I didn’t get a lot of sleep. The nurse has to do neuro testing about every hour. They are making sure that there are no new issues like problems with vision, touch sensation or nausea – so there’s like a 10 step protocol we go through every hour along with meds on different schedules and just trying to stay comfortable. I have a bunch of staples in the back of my head with a big bandage over the top. I had some ice packs that felt pretty nice on the dressing, so I went through a pile of those. There wasn’t, and still isn’t, any real pain to speak of. I have a little bit of a headache, but nothing that a Tylenol doesn’t fix. I am glad for this. I am not, and have never been, a fan of narcotics or opioid pain killers. I’ve just never liked how they make me feel, so I’m grateful that Tylenol is enough for this, too. I am hoping to be able to nap today.

Tuesday – October 2, 2018

Overnight, I had an IV replaced at midnight because the first one was hurting me when the nurse tried to use it. The neuro testing went down to about every 2 hours instead of every hour. I was able to sleep a little bit before the nurses came back at 3 am for meds and tests. They warned me that they’d be back at 5 am to remove my catheter. Little did I know that would start the parade of doctors and other people coming by to see me for the day.

The Neurosurgeon came by first thing this morning and told me that he’d had a chance to look at the visual fields test and that some of my deficits are coming from the 2nd lesion in my Occipital lobe, and he’s going to have to re-think going in and taking the 2nd one out. There is some healing that needs to happen first. What I learned at that moment was that what he meant by how I recovered was how much of my vision was coming back and not how my head was healing from the first surgery. Silly me.

The Neurosurgeon’s PA came by a little later to look at the bandage. There wasn’t any significant bleeding or drainage from it or anything.They told me that I’d be taking it off the next day and to wash my hair like normal and to not put anything special on it – just keep it clean and dry. I asked her to change it while my sister was there so she’d know what to expect. I didn’t want her to freak out when we got home and took it off ourselves. The PA obliged me. I’ve got 15 staples in the back of my head. My haircut looks a little weird, but hey… I just had a brain tumor removed. Not going to worry about it for a while. It’ll grow back, and thankfully faster than it did after losing it all from chemo.

The Oncologist was next to check in. We talked a little about the new targeted therapy I will be starting in 2 weeks. She is scheduling a PET for next week to make sure that there’s nothing else new that we don’t know about. Yes, it’s a lot sooner than they usually want, but these are extenuating circumstances. There is no way of knowing how long I’ve had these tumors, which means they could have been here for years or just a few months.

We had a longer conversation with the Radiation Oncologist. We had lots of what-if questions that we wore her out asking. That’s what happens when you’ve got someone who’s their own advocate and an EMT who want to make sure that you’re getting the care that these doctors would be recommending to their own families. These questions were more aimed to what the steps would look like if the 2nd tumor isn’t removed and they do radiation instead.

A little later in the morning the Occupational Therapist came by with instructions about what I can and can’t do for the next month  – For example, Getting dressed/undressed, I’ll be sitting in a chair to put shoes and socks on because I won’t be able to bend over to tie my shoes. I’ll need to squat down to pick things up instead of just bending over.  He also made sure that I had people to help for the next couple of weeks, which I do.

There was also a visit from a Physical Therapist. We went down the hall for a walk to make sure that I could navigate stairs and objects on the floor. I was a little wobbly looking around and trying to walk at the same time, so she reminded me that I’d have to significantly slow myself down and not try to do as much multitasking.  I didn’t expect to feel that way while I was walking, but she’s right. I am going to have to slow way down and stop for a while. I don’t want to fall.

The Neurosurgeon came back twice. Once to talk about the MRI and the last time in the later part of the afternoon to let me know that I could go home when I was ready. Either today or tomorrow. I am tired. I have no desire to be poked at all night long again, so I want to go home. So… A few hours later… just a little more than 24 hours after having a brain tumor removed, I was home.

I can’t (and probably don’t need to) tell you how nice it was to be able to sleep through the night without being poked. I slept pretty much the whole night.

Wednesday, October 3, 2018

Today was a day of hanging around the house and resting. My sister went out for a while to pick up prescriptions and get a few things from the store. I puttered around on the computer a bit and found that reading the screen was still a big challenge. I watched some TV, did some napping next to nothing else.

I’m really lucky to have the sister I have. She’s really good at thinking 10 steps ahead, so there wan’t much we needed to do around the house when I came home after surgery. Which meant that we could spend more time just hanging out. On top of all that, though, she’s an awesome cook and baker. I’d picked up a bunch of fresh blueberries and blackberries and was going to make myself a cobbler, but time got away from me. Today, she made me one of the best blackberry cobblers I’ve had since I left Texas 9 years ago. That’s priceless.

Thursday, October 4, 2018

I swapped caregivers today. My sister had to get back home, and my friend, the RN, flew in at about the same time. I was sort of hoping they’d be able to high-five each other in the airport, but that didn’t quite work out.

I also went back to work today. Before anybody gets freaked out, me going back to work means putting a 2 lb laptop on my lap and taking a couple of calls while poking at a website. It’s far from strenuous. It helps keeps me sane while everything else in my world has been spinning out of control for the past 3 months. It’s the only “normal” I’ve got going right now and I’m doing all I can to preserve that. At least as long as I can. We’ll see how I do in a week or so.

Friday, October 5, 2018

I worked some day today, as did the RN. I was able to get a couple of things accomplished, and then needed a nap. While I was sleeping, she helped get some donation stuff in my garage organized for me. This was a HUGE  help. I’d been wanting to get this done since last fall when I started my chemo treatments and haven’t had the energy to go down and get it started much less done since. She did some other organizing for me upstairs, too. Some other things in the living room/dining room had gotten away from me that my sister and I weren’t able to tackle, so it was good to get them back under control at least a little bit.

Saturday, October 6, 2018

After being in the house all week, I was feeling a bit cooped up so the RN and I decided to see what was going on at the Issaquah Salmon Festival. I figured there would be food on a stick and there was a photographer there selling prints that I’d wanted to meet for a while. Seemed like a good opportunity to do just that, but it wasn’t the brightest thing I’d thought to do. Actually, it was a significant learning experience.

We did a good amount of walking there from a parking lot, which was good. I need to get more exercise. Once we got to the festival, I had a hard time for a bit with people walking around me. I had some different expectations about my vision out there than I did at home. Not sure why, but I did.

We did find some food on a stick. By that time I was getting tired and it was time to head home. We walked back out of the festival and got a shuttle bus back to my truck. I was too tired to walk the rest of the way back. I needed a couple of things from Target so we stopped there on the way back home. The second I walked into the store I realized that the surgery had caused a new issue with glare from fluorescent lighting. OMG. It was beyond awful, and I could barely get around the store. I felt a little panicked, actually. I was already struggling with people walking close to me. Add the glare to that where I can barely see where I am going, and it was a scary nightmare. There was no amount of shopping for anything else that was going to happen there because I just couldn’t take it. We got the main thing we went there to get and we headed back home. It was another quiet evening of TV and relaxing.

Today starts the high-protein pre-PET scan diet. As I’ve said before, while it’s do-able, I’m not a fan. Especially when I have someone delivering homemade food that I would really love to eat. Fortunately, I’ll be able to go back to regular food on Tuesday.

Sunday, October 7, 2018

Today was a day of doing nothing. Getting out yesterday was nice, but it took a lot out of me. I napped a good chunk of the day. We went out for a short walk to Starbucks on the corner, but that was about it for out of the house and off the couch activities for the day. It turned out to be a nice do-nothing day for both of us. We had some nice salads and a roast chicken that my neighbor brought home from Costco for us. One more day of high-protein diet.

Monday, October 8, 2018

Both the RN and I worked part of the day today. I napped a bunch again. We took a walk around the property and back. Later, we went out to run some errands. It is good for me to look around while she’s driving and to walk around different environments.

That was my first week in a nutshell. Brain surgery on Monday, back to work Thursday and learning my limits over the weekend. The issues with glare were something of a surprise. I hope they go away at some point. One of the things I am learning is that my contacts and some sort of readers are the only way I can see halfway straight. Neither pair of my regular glasses are working – the old ones or the new ones. I don’t expect a huge change overnight, but this is a little curious to me. It’s a biomedical puzzle to think about. Tomorrow is the day for appointments. Neither of us will have time to put in any hours at work.

Tuesday, October 9, 2018

Today is 8 days post-op and appointment day from hell. First thing at 7:30 am was the PET scan. It’s not horribly involved. I have to drink half a barium drink, then get a radioactive agent injected, sit there for 40 minutes or so while it works its way through my system, drink the other half of the drink and then use the bathroom and lay on a table for about 40 minutes. The RN couldn’t sit with me while we waited for the dye to make its way around so I was more bored than usual.

Between the PET and the Visual fields, we had some extra time, so we stopped by the Infusion Center to talk to the Oncologist. She had results from the PET already. She said that there was something in my lung, they weren’t sure exactly what it was, but were assuming it was cancer, and we’d talk more about it on Friday when I came to start the Kadcyla. This was not happy news. Again. I’m so tired of not good news. This is another one of those where it could be something not cancer. They just can’t tell from the scan and there’s nothing to biopsy. I’m not happy. But… I remember another one of these where they used the same terminology and that was something that wasn’t cancer, so I’m not devastated about this yet.

There was still enough time before the next appointment to stop by the cafeteria and have breakfast. I was starving. I couldn’t eat or drink anything after 7 pm last night. We talked about the appointments so far and how bad the glare was on that floor and the hospital in general. Amusingly enough, we both picked up a Rice Krispie treat for later. Hers came from one of the local bakeries and mine was from Kellogg’s. Hers was probably better. LOL I’ll have to keep an eye out for that brand next time I’ve got an occasion to go to the cafeteria rather than have something delivered to me at the Infusion Center.

From there it was another Visual Fields test to see what’s changed in my vision since the surgery. The worst part of this was getting into the hospital, and particularly to the Ophthalmology floor and finding that the glare on the floor was overwhelming. I didn’t notice any significant difference in my vision myself. We’ll see where I am in a few weeks with peripheral vision, I guess.

After that, we headed to Neurosurgery to get the staples removed. The nurse who took them out told me that it’s like plucking a hair. She wasn’t wrong. There was a tiny pinch on a couple of them but otherwise, it didn’t hurt. She told me to keep them clean and dry like before.

The Radiation Oncologist was next. We had to drive to the other hospital where I’d had the radiation done on my breast and chest. The first thing we talked about was the PET. The Radiation Oncologist said she’d looked at it herself and said that the findings there were consistent with after-effects from the radiation we’d just finished and weren’t anything to worry about. They were normal. That was a huge relief and I told her she’d made my day. We talked a little more about the options for radiating the remaining tumor. I asked about proton beam therapy. She explained why that wasn’t an option and asked why I was asking. We told her we’d just watched a PBS special on the Mayo Clinic and they’d talked about it in relation to a patient with a brain tumor. She laughed and asked what it was about Minnesota people and all their questions. She is referring me to a Radiation Oncologist who specializes in brain radiation. I will meet her in a few weeks. This is another case where the initial healing where the 1st tumor was removed needs to heal and the swelling go down some before they can do anything else.

The RN and I made some stops on the way home. This was really smart on her part. I was able to see how each grocery store’s lighting affects me. I will be pretty well stocked for food for a while, which is good. It was interesting to see which grocery stores were more navigable than others. By the time we got home, we were both spent. She made the comment that I’d sleep well that night. She was right. I slept like a log. Tomorrow she goes home. I’m going to miss having people to talk to who help with everything around the house. I’m sure I’ll be fine. It’s still bittersweet.

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Neurosurgery Appointment

September 21, 2018

I had an appointment with a neurosurgeon at 7:15 am this morning. The scheduling was more for him than me because he’ll be away for the next week. That gives me enough time to do all the pre-surgery planning that I need to do and get to all the pre-surgical appointments as well plus arrange for people to be here with me for a couple of weeks after surgery.

He showed me the MRI. My lesions are pretty scary looking. The 4 cm tumor is much huger than I imagined when I saw it on the screen. He says he doesn’t normally do multiples, but in this case he’s considering it depending on how well I recover after removing the bigger one in my parietal lobe. That’s good news and scary at the same time.

The surgery will be done a week from Monday, on October 1st. This is fast. Really fast. Actually kind of scary fast. I know they need to act quickly to get me on the road to recovery and prevent any further damage to my vision, but wow. Not that I want these things growing any more than they already have, but this is a little overwhelming even for me.

I’m being scheduled for a Visual Fields Test to see where the deficits are showing up and how badly they’re affecting my ability to see.  Both the parietal and occipital lobes control/affect vision, particularly spatial vision. After that, there will be a separate pre-anesthesia consult, a surgical clearance from a PCP. There will be another MRI the morning of surgery after putting some special markers called fiducials on my head. This MRI will give the surgeon a 3D map of my head and brain so he knows where he is while removing the tumor.

The Neurosurgeon said that I should be functioning normally and I should be able to go home within a day or two of the surgery. My restrictions will be that I can’t bend over, lift more than 10- 15 pounds, hold my breath or strain doing anything, sleep with my head above my heart at about 30 degrees, all for a month after surgery. I probably won’t be able to drive for a while, either. I feel lucky to live somewhere that there are ride sharing services available even though they will probably get somewhat expensive depending on how many appointments I have while I’m recovering.

Telling my family is going to suck. This is scary shit. Even for me this is big. I need to get a handle on what is happening, what the rest of the planning entails, what the surgery and recovery entail, and figure out what I need to be at home afterward. Logically, I’m safer here than I would be anywhere else. Because I’m blind as a bat, I learned early to count stairs and generally memorize where stuff is in the house – like how far it is between my bed and the bathroom in the dark, or how to get out in case there’s a fire. It’s always been a no-brainer for me.

Seeing as I won’t be able to bend over, I’ll need to keep a bunch of things on countertops that I wouldn’t normally leave there like pots and pans. I won’t be able to bend over to load/unload the dishwasher, so it’ll be top-rack stuff only and wash the few other things that I use. I’ll probably use a lot of paper plates rather than mess with the real ones. I’ll need to figure something out for laundry. Someone will have to come in and take the trash out for me. I’m sure there are other logistical things that need to be worked out that I’m not thinking about yet.

Right now, I plan to go back to work after a few days. I know that sounds crazy. When I had the lumpectomy, my restrictions had to do with lifting my arms and nothing more than 5 lbs. My laptop weighs half that, if even that much. About week 4 of my leave I realized that instead of messing around on social media and not doing anything useful, I could have been working instead. The Neurosurgeon says that I’ll be back to “normal” after a few days. I’m going to give it a shot and see how it goes. If I need to go on leave I will. Some of this decision has to do with what a pain it was last time to get off the disability leave. It’s really just that it takes a while for the system to recognize that you’re back. So, if I feel wonky or am just not up to it, I can always still take the disability leave.

The hard part is that I just had family and a friend here for my lumpectomy in May and it’s going to be a lot to ask for any of them to come back so soon. I am really lucky to have some great neighbors who’ve helped out with cleaning and errands in the past that I’m hoping I can rely on again. My fear is asking too much of them an burning them out. Seeing as I’m assuming that I won’t be able to drive for a while, I’m glad that I live somewhere that I can get groceries and food delivered if I want or need that, so there’s some relief there, too. Regardless of the conveniences of living in a metro area, this all still sucks. In a very big way. My family is going to freak no matter what. I’m trying to be prepared for this, and I don’t think there’s going to be a way to be prepared enough.

As when I found the breast tumor, I’m glad we found this when we did. While they’re bigger than any of us expected, they’re still treatable. This puts me in really shitty statistically territory, but I’m trying really hard to stay positive about getting past this and there being a bigger hammer treatment that stops this disease in its tracks for the same 10-15 years other people get. Something has to work, right?

 

Posted in Diagnosis, Milestones, Surgery, Treatment | Tagged , , , , , , , , , , , , , , , , , , , , ,

What to Eat – Lemon-Dijon Pork Sheet Pan Supper

Lemon-Dijon Pork Sheet Pan Supper

Another one from the Taste of Home One Pan Meals magazine. It’s pretty well known that lemon flavors help cancel out chemo aftertastes. Dijon mustard is another flavor that helps with that. Lucky that we can have both with chicken or pork like in this dinner.

I’ve also become more of a fan of brussel sprouts in the last year after finding that they taste much better when they’ve been grilled, roasted or broiled. They’ve got a lot better flavor and texture when they’ve been in the oven vs in water.

Ingredients

  • 4 teaspoons Dijon mustard
  • 2 teaspoons grated lemon zest
  • 1 garlic clove, minced
  • 1/2 teaspoon salt
  • 2 tablespoons canola oil
  • 1-1/2 pounds sweet potatoes (about 3 medium), cut into 1/2-inch cubes
  • 1 pound fresh Brussels sprouts (about 4 cups), quartered
  • 4 boneless pork loin chops (6 ounces each)
  • Coarsely ground pepper, optional

Directions

  • Preheat oven to 425°. In a large bowl, mix first four ingredients; gradually whisk in oil. Remove 1 tablespoon mixture for brushing pork. Add vegetables to remaining mixture; toss to coat.
  • Place pork chops and vegetables in a 15x10x1-in. pan coated with cooking spray. Brush chops with reserved mustard mixture. Roast 10 minutes.
  • Turn chops and stir vegetables; roast until a thermometer inserted in pork reads 145° and vegetables are tender, 10-15 minutes. If desired, sprinkle with pepper. Let stand 5 minutes before serving.

Test Kitchen Tips

  • Cutting the Brussels sprouts and sweet potatoes fairly small means they’ll be perfectly tender by the time the pork is cooked.
  • Switch to spicy brown mustard for a little more zing.
  • We love silicone basting brushes because they can go right into the dishwasher!

Health Tip: The bright colors in this dish ensure you’re getting a variety of nutrients. Sweet potatoes are an excellent source of vitamin A, and Brussels sprouts are loaded with vitamin K.

Nutrition Facts

1 pork chop with 1-1/4 cups vegetables: 516 calories, 17g fat (4g saturated fat), 82mg cholesterol, 505mg sodium, 51g carbohydrate (19g sugars, 9g fiber), 39g protein. Diabetic exchanges: 5 lean meat, 3 starch, 1-1/2 fat, 1 vegetable.

Posted in Food/Drink, The Not Cancer Part | Tagged , , , , , , , , , , , , , , , ,

That Went to Hell Fast

September 20, 2018

My regular Oncologist is out of town at a conference, so the  Radiation Oncologist is keeping tabs on the MRI results this afternoon. She told me that if I hadn’t heard from her by 4:30 pm to call her. I didn’t have to make the call. She was calling me as soon as she had results and a plan. I knew in my gut when I saw her number on my phone shortly after 4 pm that it couldn’t be good news. I’ve not had a clean scan result yet. I wanted there to be one, but no.

Nope, it’s definitely not good. It’s downright shitty, in fact. I have two metastatic lesions on my brain. Fuck. One is nearly 4 cm (2 inches) in my parietal lobe, and the other is about 2 cm (1 inch) in my occipital lobe. The Radiation Oncologist’s already contacted a neurosurgeon and I have an appointment first thing tomorrow.

Per the Radiation Oncologist, the initial plan is to remove the larger one in my parietal lobe and probably radiate the smaller one rather than remove it. They are concerned about doing more damage by taking the 2nd one out. Until they can get them both treated, I’m being put on a reasonably strong dose of steroid to keep the inflammation and brain swelling down from the tumors.

Everyone says that of all the cancers to have, breast cancer is the one you want. It’s the most studied, the most researched, and the one with the most funding. Well, that’s partially true. There are up to 21 distinct structural sub-types and at least 4 different molecular sub-types of breast cancer. When determining which drugs to give to a patient, the oncologists have to take this information plus which biomarkers the cancer and the body’s response are secreting into account because not all drugs will work when certain proteins and biomarkers are not present. So for example, immunotherapy drugs work when a certain protein is present. This is why directly supporting cancer research is so important. The kind I have isn’t the most common. My cancer occurs in only about 25% of all breast cancer cases. That means that it’s less researched and there are fewer treatments and it’s less likely to just lay down and go into remission like everyone else’s. It’s angry, shitty cancer. That’s clearly not changing. Shit. Shit. Shit.

More tomorrow after my appointment with the Neurosurgeon.

Posted in Diagnosis, Milestones, Radiation, Surgery, Treatment, Uncategorized | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,

What to Eat – One Pan Garlicky Chicken

One Pan Garlicky Chicken

As I’ve said before, most of the food that tastes decent has a lot of natural flavor, so the onions and garlic are important ingredients in most anything I eat. They tend to cover the salty/metallic taste of the chemo drugs. Even the targeted therapies leave a weird taste, unfortunately. The good thing is, though, that I’m eating a lot healthier than I did before all of this started. Spi

I really liked this recipe. It made a nice meal that tasted great and was quick and easy.

Ingredients

  • 1-1/4 pounds small red potatoes, quartered
  • 4 medium carrots, cut into 1/2-inch slices
  • 1 medium red onion, cut into thin wedges
  • 1 tablespoon olive oil
  • 6 garlic cloves, minced
  • 2 teaspoons minced fresh thyme, divided
  • 1-1/2 teaspoons salt, divided
  • 1 teaspoon pepper, divided
  • 1 teaspoon paprika
  • 4 chicken drumsticks
  • 4 bone-in chicken thighs
  • 1 small lemon, sliced
  • 1 package (5 ounces) fresh spinach

Directions

  • Preheat oven to 425°. In a large bowl, combine potatoes, carrots, onions, oil, garlic, 1 teaspoon thyme, 3/4 teaspoon salt, and 1/2 teaspoon pepper; toss to coat. Transfer to a 15x10x1-in. baking pan coated with cooking spray.
  • In a small bowl, mix paprika and the remaining thyme, salt and pepper. Sprinkle chicken with paprika mixture; arrange over vegetables. Top with lemon slices. Roast until a thermometer inserted in chicken reads 170°-175° and vegetables are just tender, 35-40 minutes.
  • Remove chicken to a serving platter; keep warm. Top vegetables with spinach. Roast until vegetables are tender and spinach is wilted, 8-10 minutes longer. Stir vegetables to combine; serve with chicken.

Nutrition Facts

1 piece chicken with 1 cup vegetables: 264 calories, 12g fat (3g saturated fat), 64mg cholesterol, 548mg sodium, 18g carbohydrate (3g sugars, 3g fiber), 21g protein. Diabetic Exchanges: 3 medium-fat meat, 1 starch, 1 vegetable, 1/2 fat.

Posted in Food/Drink, The Not Cancer Part | Tagged , , , , , , , , , , , , , , , , , , , , , , , ,

30-Day Breast Radiation Follow-up

September 20, 2018

I had my 30-day follow up after completing my 7-1/2 weeks of radiation for my breast and chest today.  My skin looks mostly normal again. The Radiation Oncologist said that she can hardly tell they did anything to me. Believe me when I say that I can. Radiation affects the muscles, ligaments and tendons under the arm where the lymph nodes were removed, so I’m still doing a lot of stretching to get and keep my range of motion and prevent lymphedema. I’ve still got about 10 days of recovery from the Cisplatin so I’m still tired and working through the side-effects from that as well.

The follow-up PET scan will be scheduled in about 3 months. They don’t want to do it sooner because there will still be a lot of inflammation from the chemo and radiation treatments, as well as the radiation needing time to complete its work, so it’ll be harder to tell what’s going on. I’m good with that. I’m not a huge fan of the prep for a PET in the first place. There’s a pretty strict high-protein diet that excludes all carbs, sugar and caffeine for about a week before the scan. Before all this started, I could drink a gallon of black tea a day and not have a problem sleeping. That’s all changed. LOL All the chemos make sweet stuff mostly taste bad or be really rich, so that’s less of an issue. The real problem for me is making sure there’s no sugar in anything else, like salad dressing, or making sure I’m not eating starchy vegetables like carrots or peas. And… the one thing I can usually drink has a little bit of sugar, so I have to go back to plain water for that week, which on chemo is hard.

So far I’ve had no really good news from any of my scans. I am working on visualizing myself healthy for these new scans in December. This is really hard when you’ve done all you’re supposed to do and the treatments aren’t working the way they’re supposed to. New tumors aren’t supposed to show up in the 6 weeks between between surgery and radiation. The 2 targeted chemos I’ve been on the past 7 months were supposed to prevent that from happening and they didn’t. Not happy with that at all.

Now I’ve got a pile of issues that feel like they’re related to chemobrain and not healing right after finishing chemo and radiation, and my oncologists want me to have a brain MRI. I don’t need any more bad news.

 

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What to Eat – Seasonal Treats

Seeing as we’re getting into the holiday season, I thought I’d share some seasonal treats that I’ve found that aren’t awful on the taste buds when on chemos or other drugs that alter taste. Different chemos cause different taste issues, and everyone’s experiences are different. For me, sweet things are now even more intensely sweet and/or rich than they were before. Chemo dulls some flavors and intensifies others. For me, the chemos I’ve been given make food and drinks taste salty, metallic and now soapy.

Starbucks

Note: The website will give you the base nutrition information about the drinks, and I found that it’s not inclusive of all that’s on the menu without doing a search of the site. The mobile app, however, is up to date. The only thing it doesn’t do that I’d like it to is tell you the nutrition information after you’ve selected the customizations (i.e., dropped the amount of syrup or eliminated add-ins.)

Confession. I don’t drink coffee. I like the smell of it but can’t stand the taste. So all of the drinks I’m going to tell you about are not going to have any coffee in them. If you’re a coffee person, and it’s still working for you, you’ll have some additional alternatives.

The main thing to keep in the back of your mind about Starbucks is that their main purpose seems to be foo-foo drinks that are laden with lots of extra calories and a ton of sugar. While they will sell you a straight cup of coffee, their bread and butter are all those lattes and macchiatos.

Full Disclosure: As a life-long tea drinker who takes it straight up with no sugar, who more or less cut out sodas many, many years ago, I’m not a big fan of all the extra sweetener that goes into the majority of their drinks in the first place and generally have them skip or significantly reduce the amount of sweetener they add to everything. Diabetes also runs in my family so I’ve always paid extra attention to the amount of carbs and sugars in a lot of foods well before the chemo aspect was even a consideration. The chemo side effects have just made this process more necessary.

  • Grande Caramel Apple Spice – Steamed, freshly pressed apple juice and cinnamon syrup. Topped with sweetened whipped cream and caramel drizzle.
  • Made the way that it’s on the menu, it’s 380 calories and includes 77 g of carbs and 71 g of sugar. How I order it: I don’t get the point of putting whipped cream in my apple juice, and I’m removing so much of what makes this drink what it is, that I’m paying for a lot that I’m not getting, so… I no longer order the actual Caramel Apple Spice drink. I’ll order the Steamed Apple Juice below with a couple of adds instead.
  • Grande Steamed Apple Juice – Without anything in it, it’s 220 calories with 55 g of carbs and 50 g of sugar. That sugar is coming only from the apple juice, so theoretically, it’s better for you. How I order it: Add 2 pumps of cinnamon syrup with room. I’ll then ask the barista making the drink to add one little drizzle line of caramel, This little bit of caramel adds just enough flavor and sugar to balance out the flavor of the cinnamon syrup. If  Then I go to the drink station, add 2-3 shakes of cinnamon powder and a dash of nutmeg. At this point, taste it and make sure that the concentration works. If it seems too much, add a little water. This option is also just a little bit cheaper, too. Be careful how you order the caramel drizzle. If you tell the person taking your order that you’d like the caramel sauce, you’ll get charged the whole price for the tablespoon or two they put on the other drink. Part of my point in ordering the steamed juice was not to pay for all the extra add-ins and still get a decent tasting drink.
  • Grande Peppermint Cocoa – A classic holiday hot chocolate. Made with chocolate mocha sauce, peppermint-flavored syrup and steamed milk topped with sweetened whipped cream and dark chocolate curls.
  • Made the way that it’s on the menu, it’s 470 calories and includes 68 g of carbs and 61 g of sugar. It’s already made with 2% milk, which is fine with me, but you can order it with a milk alternative, or go whole hog and have them use whole milk instead. None of those add to the sugar significantly. They do add fat, which helps metabolize all that extra sugar, and it’s probably more like the hot chocolate we had as kids. How I order it: 2 pumps of mint, 2 pumps of mocha and 1 pump of vanilla syrup. In this case, it’s the vanilla syrup that balances out the mocha and mint flavors, so I leave it and tweak the other two. Give it a taste, and if it’s not how you like it, have them add another pump of either the mocha or the mint, whichever is to your liking. This doesn’t take a ton off the amount of sugar that’s in it, but it does help.
  • Grande Peppermint White Hot Chocolate –  A sweet twist on holiday hot chocolate. Made with white chocolate mocha sauce, peppermint-flavored syrup and steamed milk topped with sweetened whipped cream and dark chocolate curls.
  • Made the way that it’s on the menu, it’s 520 calories and includes 75 g of carbs and 74 g of sugar. Same thing on the milk with this one as the one above. How I order it: 2 pumps of mint, 2 chocolate syrup. Give it a taste, and if it’s not how you like it, have them add another pump of either the chocolate or the mint, whichever is to your liking.
  • Grande Gingerbread Hot Chocolate or Gingerbread Creme – Warm, steamed milk infused with the sweet spiciness of gingerbread flavors, whipped cream and a sprinkle of ground nutmeg. How I order it:  2 pumps of gingerbread syrup.  If I order this a hot chocolate, I order it with 2 pumps of mocha and 2 pumps of gingerbread syrup. The whipped cream negates the need to add vanilla syrup to mellow the flavors.

Hot Teas 

Starbucks has a number of Teavana hot and cold teas available. All of the hot teas by themselves have no calories and no extra sugars. Iced teas can be ordered without any sweeteners. It’s when you ask to add syrup to it that you get the extra sugars.  Also, when ordering hot teas, most Teavana tea bags/sachets can be brewed multiple times, so don’t be afraid to ask for 1 bag and the 2nd bag on the side. You should be able to get at least 4 Venti cups of tea for the price of one this way.

I noticed this year that they are offering some new wellness teas that I don’t remember seeing before like Comfort Wellness Brewed Tea, Citrus Defender and Defense Wellness Brewed Tea. I would talk to my oncologist before ordering these as some of the herbs in them might interact with chemo, radiation or other medications. If they say it’s okay, and you’re into these, they’re a calorie and sugar-free alternative to other drinks offered.

  • Grande Matcha Green Tea Latte – Smooth and creamy matcha is lightly sweetened and served with steamed milk.
  • Made the way that it’s on the menu, it’s 240 calories and includes 34 g of carbs and 32 g of sugar. Same story on the milk with lattes. You can leave it 2% or change it to something else. There is an inherent sweetness to this drink between the milk and the matcha powder, and there aren’t any added syrups to this one. I’ve ordered it with both 2 and 3 scoops of matcha, and it didn’t really make that much difference sweetness-wise, so it’s all about preference for this drink.
  • Chai Teas and Lattes – I know a lot of people love Chai teas. I’ll have one once in a blue moon. When I’m ordering these, I’ll do the same as the other hot drinks with syrups and knock the syrup down by half.

Bakery Items

These items are for the most part, holiday offerings and these particular flavors tend to work better than some of the standards when on chemo. Because they are more location-dependent and you just buy them from the case without needing to change anything, so I’m giving you the list without links to each one individually.

  • Apple Cider Donut
  • Cranberry Bliss Bars
  • Gingerbread
  • Almond Croissants
  • Peppermint Brownie Cake Pop
  • Iced Lemon Loaf Cake
  • Maple Pecan Muffins – Want a special treat? Mix this into some plain oatmeal for breakfast.
  • Sugar Cookies

 

Ice Creams

There are a lot of holiday ice creams that are really nice for people on chemo with taste issues. I tend to like mint and peppermint all year round, so those are my first go-to this time of year.

  • Haggen Dazs has a new limited edition flavor called Peppermint Bark. Celebrate the season with our rendition of this holiday classic. Rich white chocolate ice cream is blended with crunchy chocolaty peppermint bark and peppermint candy pieces.
    Available in 14 oz and in bars. My local grocery stores all carry it.
  • Recipe: Peppermint Bark Ice Cream Float
  • FatBoy Peppermint Sandwiches – Here in the Pacific Northwest, we have FatBoy Peppermint Ice Cream Sandwiches and bars. They’re a really nice treat and an alternative to the standard mint chocolate chip sandwiches. They are 230 calories, 37 g of carbs and 20 g of sugar, so a nice little dessert after dinner to cleanse the palette.
  • Blue Bell Peppermint Bark Ice Cream – A smooth mint ice cream loaded with luscious dark chocolate chunks and tasty white chocolate chunks containing crushed peppermint candies. There’s good news and bad news about being able to get your mitts on this ice cream. Your local store isn’t going to carry it if you’re not mostly South of the Mason-Dixon Line. The good news is that they’ll ship it direct. 😀 Don’t get freaked by the notice about Thanksgiving shipping. They ship all year round.

Limited Edition Candies

This is the time of year for holiday candies, too. Mostly those with peppermint or candy cane flavors are things that I’ll look for because a tree-shaped peanut butter cup is still a peanut butter cup. If it came with toffee or hot buttered rum I’d get more excited.

There are lots of other localized treats that I’m sure can be found that will work and satisfy any sweet cravings.

Cookies

  • Trader Joe’s Cookie Thins Triple Ginger Thins & Ginger Snaps- Trader Joe’s carries these all year round. They are good a nice, light dessert. Unfortunately, you won’t find anything about these on their website, so you’ll either have to go to a Trader Joe’s or order them from Amazon.
  • Anna’s Ginger Thins Swedish Cookies -A wonderful mixture of spices: cinnamon, sugar, and cloves. They are still carefully crafted, always using traditional baking trays which gives the Swedish Thins their delicate crispness.
  • Anna’s Almond – Annas Almond is the classic Swedish ginger thins with a hint of almond. It’s the perfect choice for parties and traditional festivities or as an enjoyable treat any time.
  • These cookies are very similar to the Trader Joe’s Triple Ginger Thins and are available in other stores, including Walmart, Target, Rite-Aid, Walgreens and most grocery stores.
  • Pamela’s Gluten-Free Pecan Shortbread Cookies – I picked these for the list because they were 100x better than the Keebler version, which used to be my go-to. Aside from that, there are a number of holiday cookies that are essentially shortbreads. Like Russian Teacakes or Mexican Wedding Cookies. If you’re not up for making cookies, these are a good alternative if your store carries them.

Cakes and Cupcakes

This time of year there are a few places that carry spice cakes that are a nice change of pace from the typical flavors. Here are a few that my local custom cupcake stores are carrying.

  • Almond Amaretto
  • Apple Spice
  • Apple Crisp
  • Apple Cider
  • Caramel Apple
  • Caramel Apple Cupcakes with Cinnamon Cream Cheese Frosting
  • Carrot Cake with Spiced Buttercream
  • Cranberry Orange
  • Gingerbread
  • Chocolate Gingerbread
  • Gingerbread Hot Chocolate Cupcakes
  • Eggnog
  • Chocolate Mint
  • Creme de Menthe
  • Chocolate Orange
  • Peppermint Stick
  • Peppermint Hot Chocolate
  • Chocolate Peppermint Cheesecake
  • Pecan Pie
  • White Chocolate Cranberry
  • Mexican Hot Chocolate
  • Hot Chocolate Cupcakes with Marshmallow Buttercream
  • Chocolate Bourbon Pecan
  • Lemon

Happy Holidays!!

 

Posted in Chemo, Food/Drink, Treatment | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , ,